Embracing Change

In the last three years so much of my life has changed.  

My beyond two decades long marriage was ending while my career took a completely unexpected and welcome turn. I moved to a new place, and I had a few surgeries. Valued in-person friendships were no longer nearby, and they shifted to Facebook interactions. All of my daily routines I had in place no longer fit into my new life, and I spent a lot of time redesigning them. Often it felt like my entire life was tossed in the air and landed scattered on the ground. Picking up the pieces and deciding how to arrange them again took up a lot of my time and mental energy.

Any of these changes would have been big for me, but juggling them all at once took a lot of effort. MS was a factor in this because I strived to maintain my health throughout these changes. My biggest goal was to avoid an MS exacerbation, and fortunately I succeeded. 

Experiencing change can alter how I view the world, myself, my past, my future, and the people around me. It’s a mental shift from what I thought I could count on to knowing how vulnerable and impermanent everything can be.  Diagnosis of MS made me question my body’s abilities and health. I thought my body was strong and healthy. Being diagnosed led me to realize that a healthy and mobile future isn’t necessarily in my control. I can eat right, exercise, and get checkups, and still have no guarantee for good health or the ability to walk in my elder years.

Adjusting to change is a skill I’ve cultivated to save my sanity and bring myself mental peace. Some years ago, my New Year’s Resolution was to, “embrace the things that I resist.” It was a great experience acknowledging when I was resisting things and actively shedding the internal resistance I had to doing them. When I was nervous about running a public meeting, I decided to dive in and just do my best. When I liked a fashion choice that I thought might be too flashy, I decided to try it anyway. When the group sang karaoke, I got up in front of the group with my not great singing voice and sang my heart out. I knew I might sound terrible or look silly, but I let myself have fun doing it.

My personal challenge that year allowed me to think about and recognize why I resisted things, and it helps to think about it when dealing with change. Most of the time my resistance stemmed from the following:

• Uncertainty for what the next step was or how to decide
• Being afraid that following that step would lead to an outcome I feared
• Being overwhelmed from the quantity of things to deal with at that moment
• Fear of making a mistake, making what I would later judge as a wrong decision, failing, or being judged negatively by others
• Holding on to a belief that I have control over the future, others, or anything other than what I do, say or believe.

Coping with change: 
With MS, a lot of change stems from the domino effect of losing mobility, cognition and physical abilities. Focusing on these losses can lead to depression and a sense of doom. When an exacerbation hits, it’s natural to worry about where it will lead and how it will affect the future. It’s all understandable and natural, but it’s also incredibly unsettling, frustrating and just plain hard. I try to embrace changes I’m resisting by doing the following: 

1. Recognize that feeling unsettled, nervous or fearful is natural. Accept it will be stressful but try to do what I can to minimize the stress.
2. Think about why the change is stressful. Does it require changing my life, my relationships, or just my attitude?
3. Seek inspiration and motivation from people who have lived through a similar change. What insight can they lend?
4. Pace myself. Take on only a few extra tasks each week or month, and reduce some of the things that aren’t necessary for my physical or mental health. Know that my regular life still requires a lot of energy, and something needs to give temporarily.
5. Know the deadlines and what’s at risk if they aren’t met. Give myself enough time to do things, but not too much so that it feels never-ending. 
6. Break down the steps to dealing with change into smaller doable tasks to avoid getting overwhelmed.
7. Prioritize based on importance, deadlines and energy level. If my energy is low, I’ll do the easy tasks for now and the more involved tasks at a time of day when I have more energy. Certain things may also be able to wait months.
8. Wait to start until I’m ready to commit. I keep a list of things to do, but I don’t start until I’m ready to do them and complete them.
9. Set realistic expectations and ambitious dreams.
10. Look forward to something. Whether it’s seeing kids or grandkids grow up and being a part of their lives, traveling, dancing, watching the sun set, or anything else small or large that brings joy. 
11. Enjoy the path I’m on even when portions of it are difficult. Give myself credit for all of the things I do that aren’t hard because I’ve put so much effort in the past into getting better at them.
12. Trust that I’ll do what I think is right for me each step of the way and that it’s enough.

Dealing with change has been a learned skill for me, and it’s taken a lot of effort to cultivate that skill. It’s been worth the effort to reduce my internal stress and increase my sense of contentment. Relaxing into and embracing change has improved my confidence, given me opportunities and experiences beyond my expectations, and made for a much more satisfied and joy-filled life.

Triathlon Lessons and Exercise Limits with MS

My sister and me feeling relief and pride
after finishing our first sprint triathlon

I’m trying to find tips on training with MS.  My first instinct is to Google triathlon training with MS. So far I’ve found people that do triathlons, but they don’t really share the nitty-gritty mechanics of how much to train and when to back off. I’m inspired by their stories, but I’m having a hard time converting their experiences to guidelines for myself. I want to know if overexertion can hurt me by contributing to an exacerbation. 

Historically people with MS were advised not to exercise hard. Now the experts suggest it’s fine to exercise hard, but pay attention to your body and don’t overdo it.  I’m trying to find that sweet spot of training and performance where I improve but don’t have adverse consequences. “Don’t overdo it” is vague and hard to apply to my life.  

For me, my obvious MS symptoms include numbness and fatigue. When I push it harder, I can experience foot drop and increased numbness that encompasses my entire body from the neck down with aching in my arms and hands. 

In hindsight I can see pushing myself in the past led to injury, never-ending fatigue and exacerbations. I injured myself at gymnastics when undiagnosed foot drop lead me to land with my big toe under my foot more than once after doing front handspring step-outs. It took eight weeks for the tendon in my foot to heal and prevented me from being able to do a lot of activities.

I found the NMSS has a very helpful brochure “Exercise as Part of Everyday Life.” It provides a lot of good suggestions, and one that I find especially useful is to rest following exercise. They say, “Fatigue that lingers after one hour of rest is a sign of having overextended.”

I’ve taken to setting my timer on my phone to see how long symptoms last after a workout. I set the timer for 30 minutes so that I can remember to check in with my body and see if the symptoms are still there. If they haven’t dissipated, I set the timer for another 30 minutes. Usually my symptoms are gone within an hour. 

I recently competed in a sprint triathlon in Golden, Colorado where it was hot and the elevation was 7,800 feet. Given it was my first triathlon and I live and train at sea level, it was tough! By the time I started the 5k my body went numb (as usual) and my arms and hands also went numb (unusual during exercise). My symptoms lasted 2.5 hours after I finished the event. 

Tonight after jogging 4.5 miles my numbness lasted 2.5 hours, but I think it’s because I’ve been fatigued and having more stress this month than usual. I probably pushed it more than I should, but it’ll be good to see what my fatigue level is tomorrow. 

My research is motivating me to train for an Olympic Triathlon which is about twice the distance of the Sprint Triathlon I did last month. I’ll track my fatigue level and the time it takes for MS symptoms to subside after exercise. I’ll see if I’m able to increase my performance while keeping symptoms from exercise limited to an hour. I think reassuring myself that I’m not doing damage to my health by exercising hard will be a huge part of succeeding with this. I also know that monitoring how I’m feeling and being honest with myself about how I’m doing will be key to staying healthy and pushing my boundaries. 

The challenge will be finding the balance between recognizing and respecting my body when it’s saying “enough” and not fearing symptoms as indicating disease progression. I think I can do it!

Why Did I Wait So Long? Considering Advice, Rethinking Success, and Removing Barriers

Sometimes it seems that advice for better health sounds like we need to do more, be better, and just generally suck it up buttercup.  I’m not impressed by stories of people saying, “If I can do it, anyone can do it.”  It completely ignores the fact that the other person had a challenge and may not have been able to do it at a different phase of their life.  It also may be something that they won’t be able to maintain for the rest of their lives. It basically ignores the individual circumstances of our own physical health, lifestyle and obligations.  We all have different demands and limitations, and we should only compare ourselves to where we are now and where we want to be given our interests and preferences. That said, other people’s stories often inspire and motivate me to take the next step on something I’d like to accomplish.

After my MS diagnosis, I read the suggestions to swim and do yoga.  I realized that I was very reluctant to do yoga, but I didn’t have a specific reason. I’d tried yoga videos, but they didn’t hook me. Later I realized that my reticence was likely because it seemed like it would be admitting that I was giving up on doing gymnastics. It seemed like accepting defeat. Once I went to a yoga class years later, I loved it so much I couldn’t believe I’d waited so long to try it! To be fair, I was busy. I was active doing other things. Life was full and doing yoga seemed like another thing I “should” do instead of something that I would enjoy.

More recently I started swimming, and it took me a while between knowing it was a good idea and actually going to the pool.  My reluctance to swim was more based on proximity, convenience and feeling slightly intimidated about all of the associated unknowns.  While talking with a friend about swimming, I shared that I was starting to think about my exercise schedule as a two week or monthly schedule instead of weekly.  With this approach, I could aim for doing certain activities once every two weeks or once a month.  That goal made it suddenly desirable and motivating for both of us to go to the pool.  By reducing the idea of success, it removed the barrier of over-committing or setting myself up for feeling like I’d failed if I didn’t continue. Once we got to the pool and swam a few laps, we were a bit giddy about how good we felt, what an excellent workout it was, and how well we each slept that night. Again, why did I wait so long to start swimming?

I’m not going to dwell on the past, but I do want to learn from these experiences. If something interests me, next time it might be good to think about the following:
1. Can I try it once without committing to a regular schedule?  It’s not all or nothing, and it won’t be failure if I decide not to continue.
2. Do I know someone who does it and will give tips about what to expect? This can help reduce feelings of intimidation or nervousness about new surroundings, people or experiences.
3. Did I used to do it and enjoy it? If so, why wouldn’t I now?
4. Do I have a friend willing to go with me? This makes for great bonding and mutual encouragement for healthy habits.
5. Do I need special clothing or equipment? Try goodwill or other second hand shops for inexpensive gear so that I’m not out much money if I decide not to continue it.

MSAA advises people with MS to consider swimming and yoga for good reasons. They’re easily adaptable to different skill levels and physical abilities. They both are a bit meditative for me, and I’m relaxed even after intense workouts. They work lots of little muscles in my body in a gentle yet strengthening way. Plus, I always sleep better on days I’ve done them. I love when I incorporate good habits into maintaining my health even when it takes me a while. I hope to be able to keep yoga and swimming as part of my ongoing activities even if they’re only a few times a month. That’s still success.

Making Relationships a Priority When I’m Tired and Everything is Important

Taking a break to watch the salmon swimming
while on a bike ride with friends

I didn’t worry about needing to consider my social life as it related to my health before I was diagnosed with MS.  The downside was I also pushed myself beyond my limits and consequently averaged two exacerbations per year. Unknowingly I was adding stress to my body and accelerating my MS disease activity.

Spending time with friends and going on adventures were something I believed I should be able to do, and I didn’t see fatigue as a symptom of something larger and more serious. I still believe I should be able to spend time with friends and experience adventures, but I now weigh and budget the energy it takes with the joy I’ll experience.

The Harvard Study of Adult Development tracked men for 75 years (and counting) and showed that people with good quality relationships with family, friends and community are not just happier than people without good relationships, they are also physically healthier. They experience less memory loss, pain doesn’t affect their mood as much, and they’re generally more resilient.  

As such, I see my relationships as imperative to my future health.  Investing time in my social relationships is not optional.  MS symptoms like fatigue can make it more difficult to build and maintain those social connections.  When work, bills, housekeeping and everyday tasks take more energy than a person has, it’s easy to turn down invitations to social gatherings and become isolated. 

Rethinking beliefs: 

I grew up believing that school came first and only after you get all your work done can you get the reward of playing with friends. As an adult with a chronic condition that affects my energy level, I’ve learned that this approach feels like constant punishment. It also neglects the human need to have more in life than work. I’ll never have enough energy to do enough of the good stuff I want to do after all the work is done.  To compensate, I pace myself on things I need to do, reduce the effort it takes to do them, and save enough energy for the good stuff in life. Among the good things are spending time connecting with other people.

I’ve heard the saying that to be rich, a person can make more or want less. I translate that as to be more energetic, I can make more energy or use less energy. I can do things that recharge my energy level, and I can conserve my energy by reducing the effort it takes to do things.

I boost my energy by exercising, eating nutritious food, being organized, pacing myself and resting. I’ll conserve my energy by streamlining, prioritizing, and delaying or delegating tasks. Doing these things allows me to feel confident that I’m doing the best I can, and it allows me to feel justified in placing a high priority on fun and relationships.

Prioritizing Joy and Relationships:

A terrific method to maximize joy with limited energy is to double up on the benefits by combining things that need to be done with social interaction. I’ll go for a walk with a friend to combine exercise, social engagement, time outside getting fresh air, and time not eating or doing other things I should limit.

If I need to do some shopping, I might go with a friend who can drive and help me find what I need. I make sure to allow time to rest before, during, and after the excursion. It often changes the experience from one that can be draining to one that is invigorating and recharging.

I’ll reduce the effort it takes to participate in social events.  I’ll shorten the length of time I’ll stay, but I’ll still show up. Sometimes I choose events that are easier to do and less physically taxing.  Other times I’ll choose events that may require a lot of energy but are rewarding and worth the effort.  If I love it, I make sure I streamline and reduce other activities so that I can have enough energy to do the one that’s a big deal.

The level of effort it takes to engage socially vastly ranges. I can choose how I want to connect at any time based on my level of energy and the relationship I want to maintain:

• Text
• Write an email
• Write a letter or send a card
• Call them on the phone
• Skype
• Meet for coffee or lunch
• Go to a movie together
• Exercise with a buddy: Go for a walk, hike, bike ride, swim, etc.
• Go to an event: Attend a concert, museum, or dance
• Plan an adventure 
• Take a trip, visit family, explore new places with someone

It also helps to explain to the people in your life how MS might limit your activities and that you’ll do your best to stay connected. While talking on the phone with my sister one night, we were having a very engaging and fun conversation when I hit the metaphorical wall.  I interrupted her, “I’m sorry, but I need to go now so I can go do nothing.”  We laughed at the time, and I still crack up that I could say that to her without being rude and without her feelings getting hurt.  It’s important and empowering to recognize when to push myself to be socially engaged and when to quit while I’m ahead.

Coping With An MS Diagnosis And What Helped Me

Everything can feel urgent when you’ve just been diagnosed with an incurable disease. Remember that you’ve likely had MS for years. You may have increased symptoms and be in the midst of an exacerbation, and you don’t know if your symptoms will dissipate or be your new reality. My advice is to try to relax. I know, it’s easier said than done.

I remember the pervasive fear I had of not knowing if what I was doing was unknowingly worsening my MS. Wondering how I was going to learn to live with MS and what my future now held overwhelmed me. The lack of control over my body rattled me. It felt like I’d been sucker punched.  While I looked the same on the outside, my waking thoughts were now consumed with, “I have MS.”

Coping with an MS diagnosis is a lonely experience, and I can’t think of any other life lesson that prepares you for it. When I was diagnosed with MS, I’d already lived through and recovered from a 110 mile per hour impact car accident, I’d lost my mother in a plane accident, I’d experienced and healed from family drama and trauma that affected me deeply.  And yet, being diagnosed with MS required me to pursue healing in a new way.  The threat was within me, and it wasn’t a one-time event.  This was something that would continue and likely progress. I lost all sense of control and the stability of feeling like I could trust my body. My mantra became, “I don’t know how I’ll learn to live with this, but it will happen.”

My path to making sense of things and being at ease with them will differ from others. All I can share is what I see in hindsight helped me and what I use today to maintain my health and sanity.

• If you’re able to, find a counselor you like and see them regularly until you feel like you’ve found some stability.  My thought process at the time of diagnosis was that I wanted to have a counselor on deck that knew me and would be available if I needed them in the future. The person I saw validated my feelings, allowed me to vent on things that might have injured relationships if shared with the people involved, and helped me cope with a huge life shift.  I can’t stress enough that the counselor needs to be a person you trust and feel comfortable with.  Don’t push it.  If it doesn’t feel right, find someone else.
• Look to people with attitudes about adversity that inspire you. For me, two exceptional people who gave me hope were Kris Carr and Cami Walker. Kris Carr has successfully lived with Stage IV liver cancer, used diet and attitude to keep progression at bay, and was living a full, productive life. Cami Walker wrote the book, “29 Gifts,” and describes how she found a way to accept MS and see her value in life through giving.
• Non-profit groups like MSAA and NMSS provide a wealth of information on MS symptoms, treatments, and medications. Search their sites for specific symptoms you’re experiencing, and try the suggestions that fit with your lifestyle.
• Patients Like Me, www.patientslikeme.com, is a site that allows you to create a profile and track your symptoms and have access to other people with MS in an anonymous format.  This site is terrific for learning about other people’s experiences with medications, knowing methods for their success in treating symptoms, and tracking your own health. Entering medications, symptoms, exacerbations, and general health information is invaluable for monitoring my own health. It’s important to know that this information is used to help researchers try to further the understanding of diseases, assist in treatments, and hopefully find cures.  Some people aren’t comfortable sharing this information, but I’ve found it to be useful and confidential in my experience.
• Local MS Self-Help groups are a tremendous resource for building relationships and sharing information. These groups involve meeting people who have experienced my challenges and can share their advice. While the information they provide is helpful, I find that meeting people who have lived through the challenges I’m facing and thrived despite symptoms that scare the heck out of me is a huge benefit beyond the suggestions and advice.  These people inspire me and reduce the fear I have for potential disability.  They provide an understanding ear when I need to talk, they encourage me when I’m nervous, and they share the humor in living with MS. 
• Facebook groups that focus on people with MS are a more recent addition to my ongoing education and inspiration since they didn’t exist when I was diagnosed.  These groups may be public or require you to be added to a closed group.  Join to the level that you’re comfortable and that won’t jeopardize your career.
• Accept that you’ll likely need a medical team, not just one doctor. In addition to your primary care physician and MS neurologist, it’s helpful to have additional specialists available. When you’re newly diagnosed, you don’t need to fill out the team immediately.  Just know that one provider isn’t going to be an expert on every issue you’re experiencing, and they won’t be able to help in every instance.  When your neurologist or primary doctor can’t help you with something, consider adding people with expertise in other areas like a physical therapist, counselor, naturopath, or urologist. Tell every provider you see about every issue you’re having. I’ve been pleasantly surprised when my physical therapist was able to solve issues I thought my neurologist would solve but couldn’t.

Be cautious when interacting with people who have MS such as in groups like Patients Like Me and Facebook, and try not to take it personally when people are harsh or say something that feels hurtful.  It helps me to remember that other people in these groups are struggling, may be experiencing depression, and may just have terrible communication skills. None of these resources and sources of support will fill every need I have in dealing with my MS. It’s helpful to learn which ones help me in different circumstances depending on my mood and needs.

Overall I don’t expect everyone in my life to understand what I’m going through.  Instead I have a menu of resources and a list of people I turn to for support depending on the issue.  It’s taken years to create this list, and I keep adding to it.

I realize that my suggestions may be overwhelming.  I’ve only taken on one thing at a time since my MS diagnosis.  I’ve read suggestions and followed what made sense at the time given my biggest issue. I also discard comments or things I read that don’t fit with my experience. 

Other than increased numbness, fatigue and clumsiness, the only thing that changed immediately after my diagnosis was that I knew what was causing my symptoms.  It helped me to remember that my health hadn’t changed; only my knowledge of it had.  It took me time to learn what helped me, and giving myself permission to take time to adjust helped ease the stress.

Relationship Questions I'll Ask Now That I Live With A Chronic Illness

Here’s the hard thing about relationships when you have a chronic illness. At any given time we’re at a certain place in how we feel about our lives and health, and we hope that those close to us can understand and be there with us. And it doesn’t always happen for our spouses, family members and friends when we need them. They aren’t always able to trust us and be dependable for us when we need them. They aren’t always able to promise or have the ability to be there for us for what we think may be in store for us.

These are good people that have been through tragedies and life hardships before. But sometimes something that isn’t temporary, isn’t going to get any better, and is most likely to get worse is beyond what they can handle.

We don’t sign up for being sick. They don’t either. The difference is they have a choice. And I’m grateful that it became clear before I desperately needed anyone that the relationship I was in wasn’t one that would support me in my probable decline.

I want to be wanted, not an obligation or sacrifice. I see other relationships where people get together after one of them has been diagnosed with MS. I’ve seen how they treat each other, and it’s shown me that it’s possible to have a relationship where hardship exists and it’s not perceived as a burden. The hard things that need to be done are treated as things people do because they love and respect each other. 

I don’t want a caretaker. I want a partner. I want someone who will do things for me because they want to, not because they feel obligated. If someone isn’t up for it, the biggest gift they can give is to admit it and bow out. 

I cringe when I see articles and comments describing friends, marriages and bodies as not “real.”  My marriage was real. And it was good, really good for a while. We were strong and there for each other for a lot of excruciatingly hard times beyond our control. But dealing with what happens and staying around for what might likely come are different things. 

For me I realized it wasn’t about whether someone would have me with my chronic illness, the question was whether I wanted them around for my future and helping me with my chronic illness. As I embark on a new relationship someday, I think the questions I’ll want to know the answer to are different and more specific than the first time I married. They extend beyond whether we want children and envision our futures and beliefs align. These are the questions I’ve compiled so far that for me capture relationship traits important for living well with MS:

1. Can you be gentle and respectful to me when my health inconveniences you?
2. Can you respect and appreciate me if it gets messy?
3. Do I like how you treat me when I’m sick or not doing well?
4. Do you continue to treat me as a partner when taking care of me? 
5. Are you there for me when I need you? Are you accessible? Do you respond to my texts or calls in a timely manner?
6. Are you there for me because you don’t want to be the bad person or because you want to be with me?
7. Will you go to doctor appointments with me and share my experience?
8. Will you do things for me even if they don’t seem like a big deal to you but you know they’re important to me?
9. How resilient are you? How do you handle stress?
10. Will how I treat you be enough for you? Will you think being with me is worth the effort it takes?

These questions are reciprocal. Just because I know I have an incurable chronic illness, it doesn’t mean that my partner won’t need the same from me at some point. Nothing is certain, but hopefully building relationships that support unknown futures may be possible. 

Frostbite and MS: Building Resilience

One of my sisters is significantly younger than I am, and she’d never heard the story of my frostbite that occured over four decades ago. She knew I had it as a child, but it was only recently that it came up and I told her about my experience nine years before her birth. It was a story that was obvious to me, but it never occurred to me to tell her about it. Somehow it came up while we chatted, and I told her the full story.

At five years old I walked to school on the last day of class before winter break. Excited for our Christmas party, I carried a trash bag full of home popped popcorn in paper lunch bags for each student in my kindergarten class. We lived in Ontario, Canada, and I walked to school with another of my sisters three years my senior.

With the wind chill bringing the temperature to 20 below, my sister and I were bundled up with winter coats, mittens, and scarves for the cold walk to school. I carried the large bag of party treats in my right hand. On the way, I cried I was cold. By the time we arrived at school, my eight year old sister was carrying my bags and had given me her hat and scarf to wrap around my hands. I’m not sure how far or how long I carried the bag without moving my hand, but it was long enough to do irreversible damage.

My sister saw me wheeled out on a gurney from the school. I endured a month of soaking my hand daily for a half hour at a time in lukewarm water. For years I was convinced I soaked my hand in boiling water. With the severe frostbite on my hand, lukewarm water felt like it was boiling water. A large blister covered my right index finger from middle knuckle to fingernail. Twice doctors peeled an outer coating that grew and encapsulated my hand like a lobster shell to reveal raw skin beneath.

Years later I learned there was discussion of amputating my right index finger. They spared it, and I’m lucky I have full use of my hand. The bones grew in a way that stunted the length of my fingers and expanded the bone at the knuckles. My right hand is about ¾” shorter than my left.

People notice my hand doesn’t look normal, but rarely do they ask. Some people assume it has to do with my MS. Others are just shy and wonder. If they ask, I’m open about explaining why it looks odd. But mostly I don’t think about it. It’s just a part of the way I am. It’s a part of my history and experiences as well as my physical body. I don’t flaunt it, but I've stopped hiding it. For me it’s a lot like how I feel about having MS.

My hands are significantly different from
having frostbite. I was lucky that I was able to
avoid amputation & retain full use of my hands.

We all have scars. Some are emotional, and some are physical and visible. I’m not ashamed of having MS. I don’t rejoice in it, but I choose to embrace it and rejoice in life. I can’t cure myself of MS, but I can accept the limitations it places on me and maximize my joy and life experiences. My MS, like my malformed hand, is a part of who I am. And given I can’t change either of them, I’m okay with them. I choose to look at the bright side. Experiencing severe pain as a young child that couldn’t be avoided helped me become resilient. My resiliency is probably my strongest asset in living with MS and living through adversity in general. While I wouldn’t choose the conditions that taught me these life lessons and built up my resiliency, I appreciate that something good can come from them.